IIH (idiopathic intercranial Hypertension) anyone else?

[Shopaholic100]

I was referred to the eye clinic a couple of years ago due to swelling of the optic nerve which was discovered during a routine eye test and have had regular checkups ever since. Initially they said it was an optic nerve head drussen. Last year my consultant noticed that the swelling had decreased compared to previous scans and said he thought I had IIH as I had lost weight about 2 stone at that point. My visual field test, colour test mri and eye test is not showing any abnormalities. This year with a little bit more weight loss (not as much as I’d like due to lockdown) the swelling has reduced further and I’m booked in for another mri with a contrast and something callled an mrv I think. The consultant keeps asking if I get headaches, but I don’t. Everything I’ve read about IIH suggests severe headaches. Is there anyone who has IIH and doesn’t have headaches? To be honest I feel fine. I don’t want to have a LP or have to take medication if I can resolve it by losing weight. Has anyone done this?

Could you please share your experience if you have this condition.

I have this condition but mine was not due to weight so not sure what use I will be I was diagnosed during pregnancy in 2014 I had numerous lumber punctures but my optic nerves where extremely swollen with bleeds so I had an lp shunt fitted and later a stent. I suffered with severe headaches visual loss and vomiting. I can tell now extremely quickly if the pressure my head changes due to headaches and feeling like I’m on a boat. My vision although much better I think there is some irreparable damage. Visual fields have never recovered fully.

@Hm2020, thanks for sharing your experience, it was really helpful. Did your symptoms occur gradually or all of a sudden? How long did they try the LP before they did did the LP shunt? Does the LP hurt a lot? Do you have to take medication?

Wishing you a full recovery.

Mine was due to weight and lost 7 stone and went into remission or so I thought.

Headaches were awful but still take tablets to keep them at bay, have tried coming off but unfortunately they came back so weight loss helped in so many aspects but not the headache thing.

I still had to have lumbar puncture to relieve pressure, not something I ever wish to go through again

Luckily my vision wasn’t damaged, however I have eye tests yearly at hospital as specsavers refused to see me whilst I was under investigation so I had to take letter from hospital explaining the damage etc to my eyes otherwise they refer me back. Like the other poster there is some parts of my eyes that will never repair

I had headaches for about 18 months and my nose leaked fluid which tasted like bleach

@Thoughtcontagion, well done for your weight loss, 7 stone is amazing! Any tips?

Did they give you time to lose the weight before the lumbar puncture? I’m terrified of having one done. Although the consultant did say he didn’t want to do that unless necessary as it’s an invasive procedure.

I saw a neurologist when they first noticed the swelling in the eyes (about 4/5 years ago), he asked if I had headaches and discharged me when I said I didn’t. Is it possible to have this condition without severe headaches?

@Shopaholic100 I done weight watchers, walking then started C25K and cycling. No time it was just booked and I had to it as they wanted to see the pressure.

I am not sure if you can have it without headaches because I was having severe migraine lasting 6/7 days I’d have maybe one week a month clear.

I was quite confident having the LP as I’d had 2 epidurals however I’d rather eat my own foot than fo through it again.

I’m now in remission from it and they said the drussen they weren’t concerned as some people can be born with it. My eyes and optic discs are good now but the nerves have damage which can’t be undone.

I’d imagine the LP is different for everyone and dependent on pain threshold and tolerance will depend on how you are. My experience will probably be nothing like yours. It’s helpful for them to see the pressure because despite my headaches and me being rather fat the pressure wasn’t as high as they expected and I really pushed myself as I feared loosing my sight

I’ll be honest and say the lumbar punctures where worse then surgery. They believed mine was triggered by hormones but they really don’t know to be honest I still have the condition 7 years after pregnancy I was on acetazolimide on and off but it’s complicated due to t he pregnancy wasn’t aloud a high dose. From diagnosis till surgery was about3 months but I was extremely ill for around 6 weeks before that it’s hard to tell I it crept up slowest because I’ve always suffered with migraines and remember some particularly bad ones just before I fell pregnant but ill never know. I’m most well now I’ve been in years would hate to jinx it though so don’t say it often.

Sorry meant to say good luck aswell op

I know you may not see this as you posted a while ago but just in case 🤞🏻
I am the same. Diagnosed from a routine eye examination. Had no clue! Diagnosed in May 2022, barely any symptoms and no headaches. I gained two stone during the pandemic from the stress of having my wedding postponed and experiencing 2 miscarriages. Trying to lose weight, getting there but find it hard. How did you lose the weight? Thanks for sharing your story.

Hi @Shopaholic100 and @CELR22 just wondering how you are both getting on?? I’ve been diagnosed with IIH this week. Similarly not really had headaches, only very mild ones which i’d put down to hormones. Picked up from an eye test and optic nerve swelling. I had a lumbar puncture and pressure was 32, however they just want to monitor me for now as i’m not experiencing major symptoms. I’m going to try to lose some weight as i’ve put on about 1st in the last few years, but am still not massively overweight. How have you found things? Everything I read online seems quite scary so i’m not sure if the doctors have just been a bit blase with me or if people really can just live with this without it having a massive effect on there life.